The Autism Hub : Knowledge & Support & Community
How can we be familiar with AUTISM?
As a parent of a Child with autism, looking for answers and informations to learn and understand about my child needs and support it is my first priority . When my son was diagnosed with autism and developmental delayed with eating disorder , I didn't know where to start and where can I get the right information to answer all my questions and concerns.
After the diagnostic I was scared and lost , I didn't know a thing about autism and where to begun with. I looked in the internet and I started searching and looking for answers . There was so many information and definitions that made me feel overwhelmed and anxious. I didn't know where to start and which information works for me.
Then, I decide to help parent and caregiver like me, to make research and information more simple and easier in their journey,I decided to take my passion one step further and create a blog for people to share my experience as mother and care giver of my son . I aim to provide top-quality articles and resources and ensure you’ll easily find everything you’re looking for. I encourage you to scroll, click, read, share and enjoy this everlasting learning experience with me.
Autism has been an unknown disability, to parents and individuals in previous days.
Even with all the information, you can possibly find on the internet. Society still doesn't have the information and education system that let them be familiar with this disability.
Although, many countries have started including autistic kids in mainstream classes and introducing autistic characters in their books and movies in order to get Neurotypical kids and their parents, to meet these kids and understand their struggles and get more knowledge about their world.
However, despite all these resources, still, families with kids diagnosed with autism don't have full access to services or funds that help them and their parents to learn and integrate into society and be accepted and respected.
Throughout my journey with my son, all The professionals I met, really didn't give me a solution to my everyday struggles or help with my son eating disorder or behaviour issues.
All their advice was general, not specific, theoretical, and more scientific explanation than a simple word or a phrase to help me with my son's behaviour issues, his sickness and his eating disorder. Each time I meet with the doctor, or speech or occupational therapist, they give me the answer that I already know!
I always hoped that after a meeting with one of the professionals mentioned above, I feel I can move forward and know what steps should I follow to guide me with my son's struggles. Instead, I leave feeling confused, alone with no answers, anxious and no solution.
nevertheless, I always found answers, advice and solution alongside autism parents groups on social media or YouTube channels, who understood my struggles, anxiety and fears, and knew how to deal with that, since they had seen, felt and lived all this before and some of this parents still struggle with it every day.
As I when through so many fights and struggles to have diagnostic for my son, speech and occupational therapy and other support. I know how is frustrating and so heartbreaking when you can't help your son to get the support he needs.
In this blog, I want to make it easy and simple for parents and caregivers to look for answers and find solutions for their struggles.
I will publish every week a blog with different topics including behaviour issues, eating disorders and speech delays other problems that I faced during my journey with my son.
As mother and caregiver of a son who is 6 years old with autism, developmental delays, speech delay and an eating disorder. I want to take you with me through my journey, to talk about autism, the challenges and some tips and methods I learned through my experience dealing with my son. In order to help other parents who are on the same journey as me.
P.S
All my advice and information are based on my personal experience, not professional advice, I recommend to parents and caregivers to consult with their doctors, specialist and therapist regarding any medical issues professional advise .
In this blog I want to answer 3 important questions :
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What is Autism?
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what are the signs that trigger the parents to be concerned and take their kids or child to see a paediatrician or developmental paediatrician?
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What are the resources for parents and where to start?
What is Autism?
AUTISM or as medical known as ASD (autism spectrum disorder ). it's a disability that not all people around us talk or hear about every day.
Scientific definition, According to autismsoeak.org autism refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication.
Nowadays, more and more kids are diagnosed with autism each year. According to WHO website, about one in 100 children has autism. As reported by the Centres for Disease Control (CDC), autism affects an estimated 1 in 44 children in the USA , and around 5 million in Europe are on the spectrum disorder as mentioned by the European Parliament .
Parent definition :Autism is disability where your kid can be diagnosed with at any age in his life . Starting at 18month or older. I define autism as sickness that take away your kid away abilities to develop and explore the world like any other child . My son became a shadow, from a beautiful baby born with smile laughing growing playing and following his sister , to a kid who doesn't even recognize his father , or his sister except his mother. Autism made my son a disable, special and different kid with difficulties facing huge challenges in his life and society .
what are the signs that trigger the parents to be concerned and take action?
My experience with my son, lead me to classify the signs of Autism into two categories. Because when my son started to behave differently and his cognitive skills deteriorated, the doctor didn't agree with me that my son has something wrong with him. They just said, "there is nothing wrong with your son, you are just worried for no reason ". The only things I requested from this doctor are more examination and investigation. But the answer was "not necessary " . one year later, my son was diagnosed with autism developmental delays and an eating disorder.
for this reason, I want to give parents as much as possible information, that helps them to notice and intervene as quickly as possible :
Scientific sign
According to the CDC, kids with autism spectrum disorder (ASD), usually have difficulties with social communication and interaction and restricted or repetitive behaviours or interests. Additionally, learning, moving and paying attention can be very problematic for kids with ASD. Although, we have to keep in mind that some of these characteristics could be found in typical kids but for kids with ASD, these characteristics make these tasks very challenging.
As reported by the CDC website, other characteristics we should pay attention to are related to kids with ASD. these might include delayed cognitive or language skills.
Parent's signs (these signs I noticed by my son before his diagnostic )
these are the major signs that parents should pay attention to them and follow up with a professional.
Eye contact
Kids with autism avoid eye contact, they always look around or close their eyes. Because it makes them feel overwhelmed and anxious looking directly at a person. For this reason, they try to avoid any eye contact even with their parents, siblings, family and stranger. In my son's case, he avoided contact with everybody except me, and I heard some mothers had the same experience but unfortunately I can't generalize this because I don't have enough data and information about it.
Wandering
usually, kids with autism, turn around with no purpose, meaning they just walk around the room in a circle or they go up the room and go down or wander in the house without playing with toys or touching any objects. My son use to turn around in his room and the kitchen with no attention to play or to be curious around the house. I have to get his attention to involve him in any activity or just get him to sit down and try to interact with him with a toy or book. But I learned later that, when kids with autism wander in the house or a new place, they are discovering the place and get familiar with it.
( In my future blogs I will talk about how we helped our son to get more interested to play with toys and get him more busy and curious instead of just wandering and not getting involved in any activity ).
Not responding to their name
when they are babies you don't notice until they turn 1 year old and when you call their names they don't respond. It's like they don't recognize their name anymore.
my son he was responding to his name when he was a baby, but once he turned one year old, his name became stronger to him, I will call his name, try to look into his eye and he will just walk away.
Cover their ears
Some people will say (" all kids cover their ears because they are scared or sound loud"). Yes, it's correct. But kids with autism cover their ears for everything, not just because they are scared or the sound is loud, but for anxiety for fear of a place never visited before or they see not familiar face or family friend visiting the house and never met before, or changing the way you usually park the car with or even the parking spot at the supermarket.
to add to that, sometimes the sounds are very painful. An autistic person Can be very sensitive and see and hear things differently than a typical person.
Speech delay
once of the important sign of autism is speech delay which is known to parents as "nonverbal ". When my son was a baby he was making sounds and I didn't pay any attention until he turned one year old and he stopped evening making sounds.
he holds my hand for requests or uses other methods like crying, or screaming to express himself and tries in his way to help me figure out his needs. it's very difficult and frustrating for both the parents and the child that, he can't express himself and the parents can't understand their kid.
Isolated
This is the most common and known sign to parents regarding kids with autism, they tend to be more isolated and keep their distance from others. It's not because they don't like to be around people. Is just not easy for them to understand our social world, and codes and it's not obvious and easygoing to them like a typical child.
They are very sensitive and they have very strong feelings. Unfortunately, they don't know how to use the specific social code to express themselves or demonstrate their feeling or empathy as we do. Usually, people in general classify them as inconsiderate or apathetic.
However, there are other signs I didn't mention in my classifications, which you could easily find on the CDC website.
In my journey with autism, I learned that each child has different signs, needs, and challenges and reacts to therapy and plans differently. What works for one kid doesn't mean it will work for your kid. But one thing sure I learn and has been a big help to me is the connection with my son, led me to determining his needs, fears, likes as well as capabilities, gave me the possibility to make a plan with the tools I have that match my son's needs.
What are the resources for parents and caregiver
Depending on which courtly you live in, there are many resources and tools parents can use in order to support their kids.
in this blog, I will cite all the useful websites and professional individual who provide courses and has YouTube channels available for parents to make it easier for them to look and find answers regarding their child.
Website
The first website I recommend to use in your research, especially regarding the sign of autism is name is the CDC (Centers for Disease Control and Prevention ) it's in the USA (United States of America ) and it has a considerable amount of information and details regarding autism, diagnostic, sign of autism and more.
The second one which I highly recommend looking at is Dr Mary Barbera Autism Mom /BC BA-D and Best Selling Author. Especially if you are still on the waitlist to see a doctor or you have a diagnostic already but don't know where to start.
When my son was diagnosed, I didn't know where to Strat, I was lost with no starting point. Even the doctor who did the diagnostic for my son, didn't recommend or suggested any therapy or where to Strat . . It was a difficult time for me and my family. I wish I knew at that time where to start, and where to go. Because the internet is full of information and unfortunately some of it is not correct or true. You have to dig in and look for facts and look for what is best for your kid.
The 3rd website I will recommend is Autism speaks it is a very interesting and very informative website, it gives you so man information regarding autism, problem behaviour and eating disorder and Speech delay. Their mission is to promote solutions for the needs of individuals with autism and their families.
I used this website to look for speech delay and eating disorders it provided me with solutions and therapy suggestions, it was very helpful to me and my family.
I also recommend parents look on social media for groups like Autism parent groups or New to autism virtual parent support and many groups where parents share their experiences and struggles and solutions they used to help their kids.
Passion Makes Perfect
I started Autism & Parent & Family with the goal of offering readers a glimpse into my thoughts and experiences. What started out as weekly posts have evolved into a dynamic site packed with information about various topics that are near and dear to me. Take some time to explore the blog and see for yourself what makes you curious and eager. Read on and enjoy!